If you have a family history of cancer, get checked. We don’t have screening programs for oesophageal cancer and its symptoms are very difficult to pinpoint. If you have persistent heartburn or acid reflux do not underestimate them and visit your family doctor.
Dr Daksha Trivedi is a Senior Researcher in Public Health at the University of Hertfordshire in England. Daksha was diagnosed with oesophageal cancer six months after her twin brother had died of primary oesophageal cancer that had advanced to the stomach.
It was a few days after Christmas 2017 when she was told, and the shock was overwhelming. While her brother had presented symptoms related to oesophageal cancer such as heartburn and reflux, Daksha was only experiencing irritable bowel syndrome and bloating when she visited her family doctor and was not expecting a cancer diagnosis. Daksha considers herself lucky; her general practitioner (family doctor) knew about her family history and sent her for both a colonoscopy and an endoscopy; this saved her life. ‘If you have a family history of cancer, get checked’, says Daksha. ‘We don’t have screening programs for oesophageal cancer and its symptoms are very difficult to pinpoint. If you have persistent heartburn or acid reflux do not underestimate them and visit your family doctor’.
At the time of diagnosis, Daksha’s elderly mother was visiting Daksha and her husband for Christmas. Despite her need to share her news, Daksha decided not to tell her mother. For a few months, only she and her husband knew about her diagnosis.
Looking back at the last three years, Daksha recognises the period from diagnosis to treatment as one of the hardest times of her life. For three months she lived in great uncertainty, waiting for her medical team to decide on the best treatment for her, based on her exams. As a researcher in public health and with a background in epidemiology from the University of Cambridge, she was aware of the medical facts: oesophageal cancer is relatively uncommon, under-researched and can result in poor outcomes.
Within four weeks after her diagnosis, she was told that her cancer was aggressive, that is ‘poorly differentiated’ and therefore had the potential to spread; Daksha could not stop thinking: ‘now I am walking around my community with an untreated and aggressive cancer’.
In addition to her own fears about her prognosis, Daksha had to deal with issues rooted in her South Asian cultural background, where it is natural to assume the worst(1). For many family members her diagnosis meant that she would have the same fate as that of her twin brother.
The only thing she was told during her three-month wait was to get herself fit whilst treatment options were being considered. Daksha already looked after her diet and was physically active. But she had to work on the emotional and psychological impact of her diagnosis and the unknown next steps.
Daksha highlights how important it was for her to find the right mindset that would help her keep positive and avoid negative emotions. ‘I started thinking about how to keep myself in the wellbeing. I learnt to develop personal strategies that allowed me to focus on what I could control and let go of things I couldn’t. I learnt to accept my diagnosis but not my prognosis – because at that time I did not know what the prognosis was going to be.’ Mindfulness helped Daksha to place her awareness in the present moment, to things she could really control.
She adopted a holistic approach around her health; it expanded from nourishing her body to nourishing her body, mind and spirit. ‘I did not want to be on the rocking chair, which provided some comfort but was not going anywhere. In the beginning I made all my decisions based on fear and I was always assuming the worst.’ Daksha managed to change her mindset and learnt to make decisions out of hope rather than fear.
Her journey took her from ‘why me?’ and ‘what did I do wrong?’ – a question very much linked to her cultural background – to accepting her diagnosis and the fact that every patient has an individual journey. ‘The point of accepting a diagnosis is a huge one for every patient. At the same time, one patient’s outcome does not have to be your outcome. I really had to move from “will I have the same fate as my brother”? to convincing myself from science, medical evidence and my own faith and belief that his outcome does not have to be my outcome’.
Her most productive consultation came three months after diagnosis and before treatment. That is when Daksha had a long and frank conversation with her consultant and discussed all her options. It was clear that doing nothing was not an option and she was offered a complete removal of the oesophagus (radical oesophagectomy). She was also informed about the possible dangers of such a long and complicated procedure and the fact that she would have problems with eating and drinking and a long recovery.
After surgery Daksha spent three long weeks at the hospital. She felt happy and relieved to return to her village and her home, one that she thought she may never see. But she had to make adjustments in her daily life – from having always to have to sleep at a 30 ° angle, to learning again how to eat, drink and even breathe. She had to face several everyday problems such as eating difficulties, Dumping syndrome and pain. With the help of a good dietitian and her mother’s resilience and support she was able to start eating high-energy foods and to re-gain her strength. An exercise referral coordinator helped her regain her strength in her lungs that had to be collapsed during surgery. During her recovery she took on hobbies that she had not ventured in the past such as art and drawing, which she found meditative and absorbing. Twelve months later she returned to work.
Daksha recognised early the need of emotional and psychological support for cancer patients and the lack of this in rural areas. She linked with Macmillan cancer support and started a cancer support group and later became a telephone buddy support volunteer for Macmillan.
Daksha has undertaken a transformative journey. ‘I started to be re-defined by my cancer and told myself I am more than the cancer. I wanted to be defined by my courage and hope. Even if the prognosis is bad you can live in the moment and focus your awareness on your well-being, empowering yourself by working from your strengths and not from fear and fate.’
Daksha offers some final words to patients: ‘You are not alone! Get yourself in a place that can support you physically, psychologically, emotionally. All these things are important for your wellbeing, which you should try and focus on. Do what you can from what you know you can control. What you can’t, let it go. Bring people in so you can get some useful pointers as to where to go and what to do and never, never, never lose hope because it is possible to travel from fear to hope’.
Daksha has published a book about her patient journey ‘NOW Living the Dream – A Tale of Surviving Cancer’ www.survivingcancer.co.uk and all proceeds go to cancer charities.
Daksha is currently the lead facilitator of Mid-Bedfordshire Cancer Support Group, UK. She is actively involved in supporting various cancer programmes:
Member of the Rapid Diagnostic Cancer Services Steering Group, Bedford, Luton & Milton Keynes (BLMK), UK
Member of Patient forum of BLMK Cancer Alliance Integrated Care Services Program
Member of the National Cancer Research Institute, Living With and Beyond Cancer Research Group
(1) Trivedi, Daksha Assuming the worst
BMJ 2019; 364 doi: https://doi.org/10.1136/bmj.l788 : BMJ 2019;364:l788
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